I’ve recently been informed that a small number of people with myasthenia find a couple of terms related to the condition offensive. These are: ‘myasthenic’ and ‘sufferer’. I just want to apologise about my use of these terms and any offence it may have caused.
More interestingly than ‘sufferer’ which has connotations of being a victim, the reason some people have taken offence to ‘myasthenic’ is because it makes them feel defined by the condition. Although personally I don’t mind the term, I understand the frustration. MG can take up a lot of your mental space and so it’s better not to reinforce it’s prominence in your life through language. The preferred alternative is ‘people/person with myasthenia’ – bit of a mouthful but it suggests working with the condition rather than it dominating.
Defining your identity wholly around MG is not healthy – it suggests that it is in control of your life. While the condition does fluctuate, so can be difficult to predict, it doesn’t need to be your defining characteristic. It suggests giving yourself over to your rogue immune system – it suggests passive acceptance. When people describe you, what do you want them to say? Is it simply ….. has myasthenia? Probably not.
Can being defined by MG be a positive thing?
Keeping all of the above in mind, there is a danger of going too far the other way. Many people I have spoken don’t want to ‘come out’ as having myasthenia and that is their choice. They are worried about people’s reactions, about being underestimated and how family members might feel about them being open. I get all this, but I personally feel like there’s a responsibility on me to try to raise awareness about the condition. This is difficult to do if you’re not willing to admit having it.
I’ve seen a lot of social media posts centred around the idea ‘you are more than your condition’ and of course that’s true. But this focus, to me, risks damaging the idea of community that can be really comforting (which I’ll discuss more tomorrow) and also encourages hiding rather than being proud of the struggles we endure and survive. I am definitely more than my condition but I do have to fight against the MG most days.
I’d love to get to a place where people with MG can say that they have the condition and there will be a look of recognition in the person’s face. Even a glimmer of recognition will be an improvement on most conversations we have. While the good work that charities like Myaware to raise the condition’s profile helps immensely, every time someone with MG speaks about their condition they are helping to build a future where the term ‘myasthenia gravis’ will no longer evoke blank expressions.